Misdiagnosis of Crohn's???

[Rhonda528]

I was diagnosed with Crohn's disease two years ago, but nothing puts me in remission. I eat a low residue diet and I have been on Asacol, Prednisone (for the last 8 months), along with 6MP (which I stopped taking recently because I had a toxic level in my blood) and I have had five Remicade infusions. I am starting to think I have been misdiagnosed. I took Flagyl for 10 days and felt GREAT, but as soon as I stopped, my symptoms returned. Has anyone else had a similar experience? Thanks!

[szilli27]

I have been going thru the same thing, except I have had 5 surgeries, and I still have not found remission with all of the drugs I have been on and just found out that something may now be wrong with my liver. You're not alone, especially if you DO have Chron's, it's a very tricky and complicated disease.

[RTFLY]

I agree with szilli27 when they said that Crohn's was a tricky and complicated disease. I suffered for years with ulcerative colitis and I am also a medical professional, so I dove into my medical books before I had surgery and did A LOT of reading about IBD. Also, kimbacat who is a regular in this forum, I think she suffers from Crohn's and may have some helpful tips. I do know that the medical treatment you are on is textbook for most patients. I thought that Pentasa was a better 5-ASA drug for patients with Crohn's, but your doctor knows best (Asacol is a 5-ASA drug that is time released in the terminal ileum and large bowel). The research on Remicade infusions also supports that this usually helps patients with active Crohn's. I am sorry to hear of your struggles. I know how frustrating it can be. After 2 1/2 years of 22 pills a day including 60mg of prednisone and 3.6gms of Asacol(12 pills) and 150mg of 6-MP and 3 Remicade infusions...I finally said "screw this" and had surgery. BUT...again, I had ulcerative colitis. Crohn's is a different ballgame. As for the Flagyl, that is an antiprotozoal and antibacterial drug that acts against certain anaerobes and protozoal parasites. Are you sure you didn't have a bowel infection? If you responded well to the Flagyl that would certainly be something I would tell your doctor. That may signal something was causing your Crohn's-like picture. I hope you get the answers you need and feel well soon. Good luck...
                                                    JCI

[kimbacat]

Hi Rhonda,

speak of the devil, and here I am :)

I have Crohn's disease too.  couple of things come to mind.  you didn't mention what your symptoms are.  cause sometimes some of the symptoms can be treated separately.  how was your dx made?  thru biopsy reports?  because that is usually the definitive way to dx.  and if you had biopsies done, you can always send the slides to and IBD pathologist for a second opinion.  Flagyl and Cipro do help some people with CD.  while Flagyl can have some pretty nasty side effects, some docs will prescribe Cipro long term for maintaining remission.  when you said you stopped 6mp cause of toxic levels, where you referring to metabolite levels based on the tests by Prometheus Labs?  were you having any other problems/side effects from the 6mp (nausea, vomiting, elevated LFTs, etc)?  did you try to lower the dose first to see if blood work improved?  is your disease primarily in your colon? mostly distal?  or is it in your small bowel?  cause where your disease is, will determine which 5ASA formulation would be best (Asacol vs Pentasa vs enemas vs suppositories).

[kimbacat]

sorry, got interrupted and didn't want to lose what I had already written.  

have you tried azathioprine (supposedly the 'kinder', 'gentler' form that breaks down to 6mp)?  have you tried methotrexate?  have you had stool cultures done to rule out bacterial overgrowth or bacterial infection?  have you been tested for Celiac disease?  

I think I've run out of suggestions.......

I hope some of this helped.  like the others have said, and to put it bluntly, it's a sh*tty disease.  it acts differently in just about everyone, so treatment has to be individualized.  good luck

[RTFLY]

See...I told you kimbacat would have some suggestions...all of which are great suggestions. There are alot of things you may need to examine and find out before you assume you were misdiagnosed. Again...good luck and take care.
                                                 JCI

[ttcoffin]

I was reading your post to someone else and found it interesting. My husband was diagnosed with crohns about 3 weeks ago. He had a colonoscopy and biopsy's came back negative but showed all the symptoms. So his gastro doc ordered the prometheus blood test. It came back saying that flags showed up a 94% chance of it being crohns and the other 6 % could be colitis. So the doc has him on Pentasa for the crohns. It is making him more regular and easier for him to go and helps the intestional pain some. I was wondering if you have ever heard of crohns NOT showing up on biopsy's but on the prometheus test?  Thanks for anything you can pass along to me..........Tanya

[RTFLY]

If I may share my experience with you. My biopsies, later in my disease(I had ulcerative colitis), started to show more of a Crohn's pattern than an ulcerative colitis pattern. All other colonoscopy's I had previously showed UC.  My doctor began to worry if maybe we were dealing with Crohn's Colitis. So, he sent my blood off for Prometheus Testing and it came back as 86% ulcerative colitis. After I had surgery, the surgical pathology showed almost 100% probability of ulcerative colitis. So, I would imagine that Crohn's may be as decieving as ulcerative colitis can be on biopsy studies. If your husband responds well to the Pentasa and Prometheus showed 94% probability, I would THINK that may be pretty accurate for Crohn's. Again I don't, nor did I, suffer from that form of IBD so my assumptions are just that. Hope kimbacat can offer more help. Take care...

                                                  JCI

[ttcoffin]

I very much appreciate your post. It has taken almost 4 years to get this diagnoses, so we are happy to have one. All the other gastro docs we saw, would do the colonoscopy and biopsy's, and when they came back ok, that would be it. They called it IBS. Well, this new gastro doc is really good and she didn't stop there. He had an upper GI with small bowel follow through and it showed his intestines healthy. The radiologist lady said that it showed no crohns but maybe it just hadn't done any damage yet. Everything is so confusing, just depends on who you talk to. But yes, he is responding to the pentasa. He is scheduled for a liver biopsy in a week though. Has upper middle pain, it is getting really bad and Iam trying to get him to go to the ER when it gets sooo bad but he wants to hold out dor the biopsy. He is afraid the ER doc will just give him a shot of pain meds and send him home. I have always thought it sounded like his pancreas but they are thinking more liver, because of his blood results. Thanks again for you post. By the way, would you happen to know if a bad liver would cause horrible pain??

[kimbacat]

Hi Tanya,

ditto what JCI said..

since CD can affect parts of the bowel not visible by scoping, it's not all that unusual to have a bx come back negative and still have the disease.  another thing to think about is the actual size of the biopsy and the size of the bowel.  one of the features of CD is 'skip patterns' where the disease skips over parts of the bowel.  if the disease is mild or not easily visible, or if the doc's aim isn't too good, he could miss the diseased section during biopsy.  especially if only 1 or 2 biopsies are done.  

and the situation you described is why a lot of patients don't get the treatment they need.  there are quite a few docs out there that are all too willing to chalk it up to IBS or needing more fiber in the diet.  and if a colonoscopy is even done and if the bx is negative they will not investigate further or treat the person appropriately.  they might chalk it up to a virus, bacteria, or something they ate.  or in my case, for 20 years I was told my diarrhea was 'all in my head'.  sorry, that was my residual bitterness sneaking out.

I'm guessing that the doc feels your husband's disease is primarily in his small bowel, since he is on Pentasa.  if you want to try finding more confirmation, he can get a SBFT (upper gi w/ small bowel follow thru), or a Ceretec wbc scan.  both of those can be helpful for finding CD in the small bowel.  and then there is also the pill camera.  it can't take biopsies, but you can get a visual look-see at the small bowel that way.  as long as they have ruled out other things like Celiac and have done stool cultures, I'd say if he is getting some symptomatic relief in only 3 weeks on Pentasa, it sounds like it's the right dx.  it sounds like you have a good gi doc and are starting in the right place.  

hope that helped some.  good luck to you both.  I hope he does well.  

[ttcoffin]

My husband had the upper gi with small bowel follow through and it showed no crohns but we were told that could just mean it hasn't done any damage yet. After his liver biopsy, the GI doc wants to go for the pill camera. She said itt takes along time to get approved and you have to have tried every other test. She said the liver biopsy is the last test.So maybe the pill will show something. I still think the upper pain is pancreas related but I am still anxious to see what the liver biopsy shows. He isn't looking forward to it but it needs to be done. The doc did mention that she thought his crohns was in the small intestine, since they checked the entire large intestine witht he colonoscopy already. Thanks for your well wishes. It is nice to talk to other people who have gone through similar situations and know what iam talking about.

[kimbacat]

it sounds like you've got a terrific doc.  like you said, the tests aren't a lot of fun, but......

I'm told the pictures from the pill camera are pretty cool.  but that it does take a bit of doing to actually have it done.  

I just had a liver biopsy in June.  had a ct-guided one.  thanks to the drugs, it wasn't a problem at all.  laying on my side afterwards for 4 hours was the hardest part.  was sore later that night after the local anesthetic wore off, but was ok the next day.  

and if there are any questions on any of the biopsies, remember, you can send them out to be looked at by someone else for another opinion.  I haven't needed to do that with my bowel biopsies, since mine visually, was a classic case of CD.  but I had my liver and lung biopsies looked at by other places, both at the request of the ordering docs.  

the waiting is hard, and not having easy answers is hard, too.  you sound like you are a good source of support for him.

[ttcoffin]

On your liver biopsy, did you have to take it easy for a week after? Thats what I read and was wondering how to handle it with his job. He is taking the next day off but wondered when he could lift again. Do you mind me asking you what your biopsy showed, on the liver? Also, do you have pain with any liver problems? We both hope this shows something, so we can finally know what is causing his upper middle pain. We would like it to be nothing but know it has to be something. I try to be support for him, I talk with his docs more then he does, and I try to reseach as much as I can on the internet but man can it be confussing and depressing. After almost 4 years, we would just like to know what this pain is. They do not believe it is the crohns because it is the one pain that is not responding to the pentasa and it is constant, at times excruciating but always aching. Thanks again for any advice you can  give and have given!

[RTFLY]

Are his liver enzymes elevated? Any ultrasound done? Has he had a hepatitis test? I hope all works out for you...
                                                      JCI

[ttcoffin]

His liver enzymes are elevated but I never found out what the number is. No U/S but a CT scan and it showed fatty liver. Some of his liver blood work showed up kind of strange and I should have asked more questions. If I can get a copy of them, I will post the numbers here and maybe someone here will know. You guys are good!

[ttcoffin]

Oh yeah, he had a hepatitis C test done and it was negative. Just wonder if the pain is pancreas, although the enzymes are doing nothing for him. He is only taking 6 a day, I have ehard that might not be enough. His pancreas enzymes were only 1 number low, so the doc doesn't think it is that but all his other symptoms match it. Then again, his symptoms match liver too, uggg. He has tiny red spider veins and swollen feet and abdomen and face.

[kimbacat]

the swollen feet and face might be from the prednisone.  puffy face is a pretty common side effect and pred makes you retain water.  there are some diseases that are kind of associated with IBD that affect the liver.  one of them is primary sclerosing cholangitis (PSC).  a certain combination of funky lab test results can usually point to that.  but a liver bx will help decide if the liver is the culprit.  

I've had pancreatitis before.  for me, the pain was a stabbing like pain in the upper left quadrant that went straight thru to my back.  sitting up and leaning forward helped a bit.  pain in the upper abdomen in the center could be trapped gas in the transverse colon.  I say that because you mentioned a swollen abdomen.  do antacids help relieve the pain?  does having a bowel movement help?  but I'm just stabbing in the dark, here.  it really sounds like your doc is doing all the right things.

I've also had gallstones and have had my gallbladder removed.  for me, that pain was in my upper right abdomen in the back and was classic in that it radiated up to my shoulder blade.

oh, and there is nothing wrong with going to the er for pain control.  and so what if they just give him a shot and send him on his way.  he's got a doc that is trying to figure it out, so it's not like he isn't addressing the issue.  but then, he is a guy, right?  I used to be stoic about that, but not anymore, it's not worth it.  the energy your body spends on fighting the pain is better put to use healing you.  

my job didn't entail any physical lifting, etc.  so, I was back to work the next day after the liver bx.  I was pretty wiped out that night, but, ok.  you really shouldn't do any lifting or anything strenuous for at least a week afterwards.  so talk to the doc about that and get a note from her so that he can make arrangements at work.  liver biopsy results are usually graded for inflammation and staged for fibrosis (scarring).  with 0 being nothing and 4 being full cirrhosis.  I had the bx done because my AST and ALT results had been running at 2x's the upper limit for about 8 months by that point.  I am taking several medications that are pretty tough on the liver.  I have a really odd case of CD which is affecting my lungs causing inflammation and scarring.  so the docs wanted to first see if the drugs were the reason for the strain on my liver or if something else was going on like in my lungs.  my bx came back grade 1 stage 1, which is just mild inflammation and mild scarring, not a problem so far.  I see a really good hepatologist and he says it isn't the meds I take and he doesn't feel that it's autoimmune hepatitis either (all my viral hep tests were neg).  I had 8 tubes of blood drawn for a whole slew of tests.  everything else has been ruled out, so we're just doing 'watchful waiting'.  

I have a lot of abdominal adhesions, so it's hard to tell sometimes what is causing my pain.  my upper abdominal symptoms now are mostly nausea, occassional bloating and more of a general soreness, like I'm really bruised.  I get partial bowel obstructions pretty regularly, but that's a whole different feeling and not one you would mistake for anything else.

I can't imagine what it must be like for you to have to watch all this happen.  it's great you are being proactive and trying to learn as much as you can.  he might be in the "what I don't know won't hurt me" phase of things.  and denial is a great defense mechanism.  the unknown and the pain and the testing can really wear you down.  again, it's great that he has you to lean on.  take care

[ttcoffin]

Thanks for such an aformative post. To start with, his swelling all started before any of these new meds that he is on. I also just noticed on Friday,thathis glans in his throat are so swollen, I can see them from just looking at them. It is right under his ears, on both sides. You can't see his jaw bone and it looks like a chipmunk, storing food.He made an appointment with his internal medicine doc for tuesday. My hubby said he noticed it about a month ago, and didn't think it was anyhting serious! I guess we will find out tuesday.

As for this pain, antacids don't help neither does a bowel movement. Nothing changes it or makes it better.After eating the pain increases alot!! But it always hurts.He had his gallblader out almost 4 yeras ago and felt great for about 2 weeks, then this pain in his upper middle started. They found out he has an autoimmune disorder.They said it is attacking his liver and thyroid.They are thinking he has autoimmune hepatitis. I guess all of this will show up on the biopsy.You are right about my husband, he hates complaining and doesn't want to look "whimpy", so he tries to hold out but sometimes I know he should be at the ER. I know I would be!

His job requires lifting and lots of physical activity, so he might take a couple of days off, as getting approved for light duty is a big process.

I will check into the other thing you mentioned and see if it sounds like what symptoms he has. Thanks again, I really do appreciate it and yes, it is very hard to watch him go through this and have so much pain and there isn't anything I can do! Take care and thanks for sharing your story with me.........

[Torells]

When I found out I had Crohns in my large intestines, I was down to 83 pounds at 5'6".  One day I came home from work and black water just started coming out instead of stool about 70 times a day and terrible cramping constant, to where I had a scar on my abdomen from rubbing.  I began to live in the washroom.  I called my gastro and he admited me in the hospital and I was released after a week, but never got better, because he misdiagnosed me with UC.  Around my two week follow up with him, and after calling him everyday and telling him I wasn't getting better, I told him I could not make it in to see him, because I couldn't stay away from the washroom that long.  He told me there was no more he could do, but go to the University of Chicago.  My father drove me there and I was admitted.  I was almost dehydrated at that point.  (The only symptom I had prior to the black diareaha, was I was put on iron, because I must have been loosing blood in my stool, before this all happened, but they never suspected this they just thought I just needed iron.)  Any way the Dr. that came in to see me at the University of Chicago, said I probably had Crohns and that he would do a Colonoscopy the next morning to confirm what he suspects.  He started me on steriod iv, flagyl and other things, as well as TPN.  The next morning after the colonoscopy he told me I had Crohns in my large intestines and because of the two week of all those bowl movements (60 to 70 times a day of liquid coming out) my muscle in my colon was washed away.  Needless to say, I was in the hospital for two months with no food, just iv. They wanted to send me home with a feeding tube, but I asked for two weeks more.  If I could eat solid food and make  a normal bowl movement then they could send me home.   He said ok.  Well I did make a small piece of bowl movement and showed the nurse and that was my ticket home.  I was put on imuran in the hospital 100 mgs a day, predisone and flagyl.  I continued to stay on the predisone for about a year, and the flagyl for about 8 months.  But the Imuran was what put me in remission.  I have not been to the hospital since 1991.  I did try to decrease my imuran about 4 years ago to 1/2, which was against my drs. wishes.  He said he does not like changing the dosage of the medication that puts you in remission. In April a month after I lost my job, I had solid dark red stool, I don't know if it was solid all of the way through, but I do know that my CBC, prior to this day, the red count was alittle low.  The next one I took 3 months later was fine.  I go for my yearly checkups and a colonoscopy every 5 years and use cortifoam when I notice blood, but it is usually streaks, or on the Kleenex.  Has anyone had solid looking deep red blood on their stool?  The toilet water was even red.  This continued the rest of the evening (2 more times) and then I went to bed.  The next morning the cortifoam must have started to work, because the stool was just streaked , then by the second day, it appeared to be gone.  Currently, I am back up to 100 mgs of Imuran a day, and am going to stay on it.  I did noticed my stool hadn't been as consistently formed as when I decreased the dosage.  Alot of times it was soft/mushy.  Anyone please respond if you had a similar problem.

[Blackbirdz]

I have suffered from Crohn's disease since I was born.  The doctors thought it was ulcerative colitis until about 3 years ago when they decided my problems were more consistent with Crohn's.  I have taken almost all the drugs.  Asacol made all of my symptoms worse.  Prednisone works to alleviate intense pain from bad flare-ups and allows me to gain weight, but does not put me in remission.  I also spent about 2 years on imuran, which had no real observable effect on me at the time. I have had 5 or 6 remicade infusions, which seemed to pick me up for about 3 days, and then i was back to the old symptoms again.  In 21 years I have never experienced remission.

My symptoms are classic:  diarreah (always), bloody stool when I am having a flareup, with general stomach cramping and pain, nausea, often anemia, and sometimes vomiting caused by painful bowel movements ( this is usually when there is blood).  Also inability to gain weight, frequent joint pain, swelling of the feet (in the past).

For the past year, I have been experiencing a very specific localized pain.  It is directly below the very center of my ribcage in my very upper stomach area, and it is a very intense dull aching pain.  It is NOT heartburn, it is an entirely different sensation.  The pain extents to my upper back, between my shoulder blades, and rubbing this area on the back can make the pain less prominent.  No antactid or pain reliever seems to do anything, although I have had some success sometimes with narcotic painkillers.  The only this that seems to really alleviate the pain is smoking marijuana, which is medicinal for Crohn's sufferers in my state.  Doing my own research, this pain seems to be classic gallbladder pain.  But it also seems to be consistent with pancreatitis - a risky side effect of the imuran.  But I havent taken since over a year ago.  Could this be a delayed side effect?  Has anyone else with Crohn's experienced this problem?  And could it be that my problem is entirely different than I have thought in the past, or do I just have an added problem on top of the Crohn's?

[claudie]

I have had constant diarrhea/nausea for years with left and lower abdominal pain.  I have had many abdominal surgeries and have lots of adhesions.  I just had a colonoscopy last week and the week before a small bowel follow thru.  The small bowel test was negative and I am waiting the results of the colonoscopy.  They also tested me for Celiac disease.  The pain is so bad at times it is worst than having kidney colic.  My doctor is treating me with Mepergan Fortis for the pain.  I was wondering if any of you had these symptoms or if you could give me some advice.

[claudie]

I have had constant diarrhea/nausea for years with left and lower abdominal pain.  I have had many abdominal surgeries and have lots of adhesions.  I just had a colonoscopy last week and the week before a small bowel follow thru.  The small bowel test was negative and I am waiting the results of the colonoscopy.  They also tested me for Celiac disease.  The pain is so bad at times it is worst than having kidney colic.  My doctor is treating me with Mepergan Fortis for the pain.  I was wondering if any of you had these symptoms or if you could give me some advice.

[claudie]

I have had constant diarrhea/nausea for years with left and lower abdominal pain.  I have had many abdominal surgeries and have lots of adhesions.  I just had a colonoscopy last week and the week before a small bowel follow thru.  The small bowel test was negative and I am waiting the results of the colonoscopy.  They also tested me for Celiac disease.  The pain is so bad at times it is worst than having kidney colic.  My doctor is treating me with Mepergan Fortis for the pain.  I was wondering if any of you had these symptoms or if you could give me some advice.